As part of the annual “March on the Hill” event in Washington, D.C., sponsored by the Cystic Fibrosis Foundation, Texas volunteers joined other advocates from across the U.S. to present Rep. Lloyd Doggett with the Legislative Champion Award for his efforts on behalf of the cystic fibrosis (CF) community.
Congressman Doggett, a Democrat who represents Texas in the U.S. House of Representatives, received the honor for being an active sponsor and for advancing the Ensuring Access to Clinical Trials Act (EACT), which was signed into law on Oct. 7, 2015. The new law allows patients with rare diseases, such as CF, to take part and benefit from clinical trials without risking the loss of important Social Security or Medicaid benefits.
During the event, Sen. Orrin Hatch, a Utah Republican, and Sen. Ron Wyden, an Oregon Democrat, were also honored for their support of CF patient rights by championing the clinical trials law.
“Thanks to the dedication of our volunteers and the inspiring leadership of Senators Hatch and Wyden and Congressman Doggett, the Ensuring Access to Clinical Trials Act was signed into law. This award is an important demonstration of how our community comes together with members of Congress to make meaningful progress in expanding access to vital care and treatments for people with CF,” said Stacy Dollar, executive director of the Central Texas Chapter of the Cystic Fibrosis Foundation, in a press release.
“March on the Hill” brings a mix of new and familiar faces to Capitol Hill every year. This year’s march, on Feb. 25, 2016, was the foundation’s 10th such event, connecting CF advocates with their elected officials.
CF is a genetic disorder that affects mostly the lungs, but also can involve the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. In the United States, an estimated 1,000 new cases of CF are diagnosed each year, with more than 75 percent of the CF patients being diagnosed by age 2. Nearly half of the CF population is 18 or older.
“Patients with rare diseases and their families need our support. Now they can better explore alternative treatments for their life-threatening illness without fear of losing their medical benefits. Working with the Cystic Fibrosis Foundation, I am very pleased we have succeeded in permanently removing a barrier to life-saving research,” Rep. Doggett said at the event.